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Independent Living News & Policy from the National Council on Independent Living

NCIL Statement on Hurricane Ida

The National Council on Independent Living (NCIL) joins the concern of the people of the Gulf Coast region as Hurricane Ida makes its path toward landfall. The National Weather Service reports that Ida will move into the Gulf of Mexico tonight and Saturday and make landfall along the northern Gulf Coast on Sunday. Ida is expected to be a major hurricane when it makes direct impact with New Orleans on this anniversary of Hurricane Katrina. The risk of life-threatening storm surge inundation and dangerous major hurricane force-winds are increasing for parts of the northern Gulf Coast region along with heavy rain and flooding.

The dense population, neglected infrastructure, and concerns for a region constantly impacted by natural disasters are a combination that are particularly troubling for disabled people who could be impacted by this weather event.  This part of the US is just entering the season most vulnerable to severe weather. Providing services and supports both during times of uncertainty leading into and in the aftermath of natural disaster highlight the critical role Centers for Independent Living (CILs) play for disabled and aging members of our communities. We send our support to the area CILs and their advocates as they help people prepare for the potential impact, and as we know they will efficiently spring into action to help disabled and aging people respond to this disaster, if necessary.

Following the themes from our recent Stakeholder call organizing advocacy to support disaster preparedness and response legislation in Congress, the Real Emergency Access for Aging and Disability Inclusion for Disasters Act (REAADI, S. 2658 / H.R. 4938) and The Disaster Relief Medicaid Act (DRMA, S. 2646 / H.R. 4937) held Friday, August 20th, Reyma McCoy McDeid, NCIL Executive Director, reiterated the critical role of CILs in disasters. “Centers for Independent Living demonstrate time and again that they are more than just agents for integrating disabled and aging people into communities. CILs are critical first responders, ensuring communities include people with disabilities when they respond to disasters and integral partners when communities rebuild from disasters. We keep each other safe and living in the community.”

NCIL stands with the disability community as we face the potential of another natural disaster within the ongoing pandemic, and reminds potentially impacted CILs that NCIL has an established disaster response fund available, should the need arise.  Support CILs that have been impacted by natural disasters by selecting “disaster relief fund” from the “select a campaign” drop box on NCIL’s donation page.

Access NCIL’s REAADI/DRMA webpage, which has resources, including a toolkit, to assist you in advocating for the inclusion of disabled people in emergency preparedness initiatives in your state.   

Together, we can ensure that our people stay safe and in the community.

NCIL Statement on the Overturning of the Eviction Moratorium

Late yesterday, the United States Supreme Court issued a decision that the housing eviction moratorium from the Centers for Disease Control (CDC) was improper. The housing eviction moratorium was an order from the CDC to the people who lease or sell housing. It ordered them to let people who could not pay their rent or their house payments because of COVID stay in their houses. Eviction is the legal process used to remove people from their housing.

The decision from the Supreme Court means that housing providers can take action to remove people from their housing, even if they have not been able to pay rent because of COVID. As many as 7 million households could lose their housing, as they are currently at least one month behind on payments. Most of the families at risk of losing their housing are households of color, people with disabilities and other marginalized groups.

For disabled and aging people, losing permanent housing is especially hard. For many people, it will mean we have to go into an institution. We will not be able to find housing that is usable if we need accessible features.  Homeless shelters are often not usable if we need accessible toilet or showers, or need to bring someone with us to help us with our daily tasks. And during COVID, leaving private housing to go into any type of group settings, whether it is a homeless shelter, a state hospital, a group home, or a nursing facility, puts many of us at risk of getting sick with COVID.

What can we do? Centers for Independent Living and Statewide Independent Living Councils can help through our core services of systems and individual advocacy. Here are some ways our network can help disabled and aging people respond to this crisis:

Systems Advocacy

It is widely reported that delays at the local and state levels have meant that emergency rental assistance is not getting to the people who need it. Advocates need to work with state and local agencies to make sure they are not making the process overly complicated, and are moving quickly to get these funds to help people.  See this spreadsheet for more information on how your community is using Emergency Rental Assistance funds from the US Department of the Treasury.

If your state or local government have not issued eviction moratoriums at the state or local level, advocate to get those put into place.

Join in the advocacy asking the Department of Housing and Urban Development (HUD) to issue an eviction moratorium for renters who live in housing that gets federal assistance, such as public housing, or Section 8 housing.  People living in foreclosed homes backed by a federal mortgage are protected from eviction until Sept 30, 2021 although the loan still can be foreclosed.

Individual Advocacy

Help people who are at risk of losing their housing talk to the landlords or mortgage holders. Ask if they can stay in the housing if they can find a way to pay part of the rent or the back-owed rent. Get any agreements in writing.

Help connect people with emergency rental assistance programs. Advocates can look for local programs at this website from the National Low Income Housing Coalition.

Help people reach out to their members of Congress. The member of Congress may be able to help connect the person to resources. More importantly, the member of Congress will hear about the real issues facing the people at home in their districts. 

Last Chance to Sign on to REAADI & DRMA Support Letters: Due this Friday!

Earlier this month, Senator Casey (D-PA) and Congressman Langevin (D-RI) reintroduced the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938), and Senator Casey and Congressman Panetta (D-CA) reintroduced the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937). You can find more information about these two critical bills, including information about the bills, previous alerts, our archived Stakeholder Meetings, and our Disability Equity During Disasters toolkit at our REAADI for Disasters Act and DRMA web page.

NCIL is grateful to Senator Casey, Congressman Langevin, and Congressman Panetta for taking the lead on these important bills that will help address and dismantle the barriers disabled people face before, during, and after disasters. We will be sending letters expressing our strong support for these efforts, and the dire need for the REAADI for Disasters Act and DRMA to be passed and implemented quickly.

Please join these sign-on letters expressing your organization’s strong support for these bills and thanking Senator Casey, Congressman Langevin, and Congressman Panetta for their leadership!

Sign your organization on to our REAADI for Disasters Act & DRMA Support Letters!

If this form is not accessible to you, or if you have any questions, you can email [email protected] with:

  • your organization’s name exactly as you would like it listed
  • whether you are a national, state, or local organization
  • what state you are in (if state or local)
  • and your preferred email address (for internal purposes only)

Information / Action Alert: Budget Reconciliation and HCBS

On Tuesday, August 10, the Senate passed their approximately $1 trillion bipartisan infrastructure bill, the Investing in a New Vision for the Environment and Surface Transportation (INVEST) in America Act (H.R. 3684) in a 69-30 vote. This bill includes $550 billion in new federal spending, and on top of the traditional funding for roads, bridges, and public transit, the bill includes several new investments, including funding for improving broadband access, addressing racial inequities in infrastructure, and it includes pieces of the All Stations Accessibility Program (ASAP) Act to improve accessibility of rail systems.

The next day, August 11, the Senate passed their $3.5 trillion budget resolution (S. Con. Res. 14) in a 50-49 vote. The budget resolution sets the stage for the budget reconciliation package, including the major investments in home and community based services (HCBS) and the direct support workforce that we have been fighting for. It also sets the stage for other crucial investments, including (but not limited to): filling the Medicaid gap; Affordable Care Act (ACA) expansion; expanding Medicare by lowering the eligibility age and by covering vision, dental & hearing; paid family and medical leave; child nutrition; critical tax credit extensions; providing immigrants a path to citizenship; child care and universal Pre-K; tuition-free community college; Native health, education, and housing programs; housing affordability and equity; and environmental justice.

[Read more…]

Join us for a REAADI & DRMA Disability Community Stakeholder Call This Friday!

NCIL is excited by last week’s reintroduction of the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938) and the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937). The REAADI for Disasters Act and DRMA are two essential bills that will help address and dismantle the barriers disabled people face before, during, and after disasters.

In an effort to coordinate advocacy efforts and drum up support for these critical bills, NCIL held two stakeholder calls for the Independent Living network earlier this week. On these calls, NCIL, Congressional representatives, and invited guests celebrated the reintroductions and discussed the many ways to take action to get the REAADI for Disasters Act and DRMA passed into law.

Next week, NCIL will be hold another stakeholder call for members of the disability community outside the Independent Living network. On this call, attendees will have the opportunity to hear from speakers from a range of disability organizations about their disaster-related efforts, how engaging their disabled consumers / constituents made their efforts more successful, and how they plan to fight for the REAADI for Disasters Act and DRMA. Attendees will learn about opportunities for collaboration and will have the opportunity to ask questions. We hope you will join this call, and please feel free to forward the information about this call to others who may be interested!

The Disability Community Stakeholder Call will be on Friday, August 20, 11:00 a.m. – 12:00 p.m. Eastern. The call will be held as a Zoom webinar. ASL interpreting will be provided. CART captioning will be available in the Zoom platform and at a separate Streamtext link. Please email [email protected] if you have any questions or need any other accommodations. Please submit requests for other accommodations at least 24 hours before the event.

The Disproportionate Impact of Vaccine Mandates on Disabled People

By Hanalei Steinhart, NCIL Summer Policy Intern

The United States has recently seen a nationwide resurgence of Covid-19 alongside a push to return to in person work. Many people feel safe to do so as they have been vaccinated, however, insufficient people have been vaccinated to slow the spread of Covid-19. The continued spread of Covid-19 and its variants endangers disabled people who are unable to get vaccinated or will not gain immunity from a vaccination. Many authorities are implementing vaccine mandates to address the continued spread of disease. However, vaccine mandates disproportionately impact people who cannot get vaccinated or are unlikely to develop immunity. Vaccine mandates also force disclosure of disabilities or other medical conditions which may lead to an increase in discrimination.

There are multiple groups of people who have refused vaccination or are unable to get vaccinated. Some of those people are those typically termed “anti vaxxers” who refuse all vaccinations for a variety of reasons including political or religious ones. Others are hesitant about getting a vaccine for a variety of reasons such as African Americans concerned about the government’s history of medical abuse and experimentation in the US. Another group who has often been overlooked are those people who are unlikely to develop immunity from the vaccine. Lastly, some people are unable to get vaccinated for medical reasons. The refusal of those who are eligible and able to get vaccinated has led to an increased spread of Covid-19 that disproportionately impacts the lives of disabled people.

Herd immunity is based on the principle that when a sufficient number of community members are vaccinated, a disease no longer has enough susceptible people to let it travel through the community (Mayo Clinic). This protects the few that are unvaccinated because they are unlikely to encounter the disease. A vaccine mandate is a tool to protect people who cannot be vaccinated. It is issued by a relevant authority and requires individuals to either provide authentic proof of vaccination or disclose their reason for not being vaccinated (CDC).

[Read more…]

­Reminders & Updates on REAADI & DRMA: Stakeholder Meetings, Toolkit Release, and Sign-on Opportunity!

NCIL is excited by the reintroduction of the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938) and the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937) Thursday in the Senate and Friday in the House. The REAADI for Disasters Act and DRMA are two essential bills that will help address and dismantle the barriers disabled people face before, during, and after disasters.

Reminder: Join us for a Stakeholder Meeting!

We would like to remind you to join NCIL, Congressional representatives, and invited guests for a Stakeholder Meeting this week! Join us to celebrate the reintroductions and learn how you can take action to get the REAADI for Disasters Act and DRMA passed into law. We are hosting two Stakeholder Meetings to accommodate multiple time zones. The same information will be presented on both calls.

Stakeholder Meeting 1

When: Tuesday, August 10, 11am – 12pm Eastern

Register for this call 

Stakeholder Meeting 2

When: Thursday, August 12, 3pm – 4pm Eastern

Register for this call

Both meetings will be held as Zoom webinars. ASL interpreting will be provided. CART captioning will be available in the Zoom platform and at a separate Streamtext link. Please email [email protected] if you have any questions or need any other accommodations. Please submit requests for other accommodations at least 24 hours before the event.

Check out our Toolkit!

To coincide with the reintroduction of these important bills, we are releasing Disability Equity During Disasters: A Toolkit for Passing the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act and the Disaster Relief Medicaid Act (DRMA). This toolkit contains information on both bills, as well as tools for organizations and advocates to take action and get these bills passed!

Sign our REAADI for Disasters Act & DRMA Support Letters!

NCIL is grateful to Senator Casey, Congressman Langevin, and Congressman Panetta for once again taking the lead on these important bills. We will be sending letters expressing our strong support for these efforts, and the dire need for the REAADI for Disasters Act and DRMA to be passed and implemented quickly. Please join these sign-on letters expressing strong support for these bills and thanking Senator Casey, Congressman Langevin, and Congressman Panetta for their leadership.

You can sign on to these letters by using the online form by Thursday, August 12.

If this form is not accessible to you, or if you have any questions, you can email [email protected] with:

  • your organization’s name exactly as you would like it listed
  • whether you are a national, state, or local organization
  • what state you are in (if state or local)
  • and your preferred email address (for internal purposes only)

REAADI for Disasters Act and DRMA Reintroduced Today: Join Us for a Stakeholder Meeting Next Week!

NCIL is excited by yesterday’s reintroduction of the REAADI for Disasters Act (S. 2658) and DRMA (S. 2646), and we invite you to join us for a Stakeholder Meeting next week!

The Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act and Disaster Relief Medicaid Act (DRMA) are two essential bills that will help address and dismantle the barriers disabled people face before, during, and after disasters. The REAADI for Disasters Act will help ensure the diverse voices of disabled people and older adults are included in disaster preparation, response, recovery, and mitigation. It will ensure states and localities can better include and support disabled residents through the creation of a national network of training and technical assistance centers. It will require a review of spending to ensure compliance with the Americans with Disabilities Act and a review of the extent to which disabled people’s civil rights are upheld during and after disasters. It will also recognize and strengthen the role Centers for Independent Living (CILs) play in local disaster response. DRMA will help ensure disabled people who are forced to move out of state because of disasters are able to keep their Medicaid services. DRMA would provide states with resources and supports to enable this change, including a time-limited increased FMAP.

NCIL and our allies have worked to address the disaster-related needs of disabled people for years. Over 15 years ago, NCIL’s Emergency Preparedness Task Force (now a permanent NCIL Subcommittee) was the first formal disability community effort to address this issue. Several years later, NCIL entered into a Memorandum of Understanding (MOU) with the Federal Emergency Management Agency (FEMA), and later entered into an MOU with the American Red Cross (ARC). When they failed to hold up their end of the bargains, NCIL canceled the American Red Cross MOU and allowed the FEMA MOU to expire – but we have never let up the pressure on either of them to meet their obligations to our community.

Additionally, NCIL entered into an MOU with Portlight Strategies, which was instrumental in supporting disaster-impacted CILs and the people and communities they support. That partnership has continued, with NCIL hosting a full-time Portlight Fellow in 2019 to build a political and community support for the REAADI for Disasters Act and DRMA. NCIL has also worked closely with the Partnership for Inclusive Disaster Strategies as they’ve led drafting of this critical legislation.

Now, we need all hands on deck to get these bills passed. Disabled people and older adults are two to four times more likely to die or be seriously injured during disasters. This is the direct result of discrimination and exclusion from disaster planning, response, and recovery efforts. We need the REAADI for Disasters Act and DRMA.

[Read more…]

NCIL Mourns the Loss of Adonis Brown

It is with great sorrow that the National Council on Independent Living (NCIL) wishes to share news regarding our friend and colleague, Adonis Brown, who passed away on July 28th in Durham, North Carolina. Adonis was known for speaking openly about being an exception to the rule for children with disabilities in 1950’s USA because he thrived with his large family in spite of the fact that institutionalization was the norm for individuals who were born with significant developmental disabilities.

“My life development took place before the Americans with Disabilities Act of 1990 (ADA), or the Individuals with Disabilities Education Act (IDEA) formerly the Education for all Handicapped Children Act of 1975, or the Rehabilitation Act. Despite the barriers, stigmas, and narrow thinking of that time I persevered. In April 2010 I completed a Bachelor of Arts Degree in Psychology from Ashford University… I later went on to continue my education endeavors completing the required studies for a Master of Business Administration Degree with Specializations in Organizational Leadership and Health Care Administration. What I may lack in paid work experience I more than compensate with my drive, passion, and determination to succeed,” he wrote in his bio for the North Carolina Statewide Independent Living Council website during his tenure as a member.

Although Adonis led a life that was fully committed to the philosophy of Independent Living (IL), he was incredibly intentional in ensuring that his efforts extended beyond IL, serving on the Durham, North Carolina Mayor’s Committee for Persons with Disabilities and establishing Durham’s first Disability Resource Center. Additionally, Adonis supported a wide variety of nonprofit organizations in the capacity of board member including the North Carolina Council on Developmental Disabilities, the Association of Self-Advocates of North Carolina, The Arc of North Carolina, and the Protection and Advocacy System Administrators (P&A) for persons with disabilities in North Carolina, now known as Disability Rights North Carolina.

[Read more…]

NCIL and FEMA Collaborate on #ADA31 Blog: Three Ways the ADA Supports Equity and Independence for People with Disabilities

NCIL’s new Executive Director, Reyma McCoy McDeid, recently collaborated with the Federal Emergency Management Agency (FEMA) to create a blog in recognition of the 31st anniversary of the Americans with Disabilities Act. Emphasizing the importance of Independent Living networks feeling empowered to create partnerships with emergency preparedness providers at the local level as an important diversion from institutional settings tactic, it also incorporates the federal-level mandates that can support these efforts.